I am wondering whether any of you lovely people could offer me any advice. Here is my story so far:
About 18 months ago, after feeling completely exhausted for months, my colleague convinced me to go to the GP as she had recently been diagnosed with a severely underactive thyroid with similar symptoms. I was tested for a range of things, and the GP I saw (a locum, sadly) spotted my low but officially normal B12 level (I think it was 148) asked whether I had experienced pins and needles in my hands and feet, which I had, and whether I had a family history of pernicious anaemia (which I do - my granddad has it), and as a result prescribed me the loading dose of injections, and IFA test.
I was in the middle of the loading doses when the IFA test came back negative, and another GP at the surgery looked at all my test results and decided that I was fine, and shouldn't continue with the loading doses (I think I'd had 3 by that point). He told me that as my b12 levels were normal, my cell size was normal, and the IFA was negative I didn't have pernicious anaemia. I spoke to him over the phone and just accepted what he said, and the remaining injections were cancelled. It was only when I requested print outs of the test results that I saw that although my b12 level was 'normal' it was right at the bottom end of the range. I jointed the PAS and spoke to Martyn who encouraged me strongly to go back to the GP to get the injections restarted. I ended up seeing another GP who wanted to prescribe anti-depressants (amongst other symptoms I was experiencing horrible levels of anxiety and very low moods) but who agreed to resume the loading injections. I had these then saw the second GP who agreed that I could have the three monthly injections for a year, and then get my b12 levels retested.
Over the last year I have felt much better, although never quite like I used to - I have a very long commute and my job can be very stressful, so it's very hard for me to tell whether my exhaustion is caused by that or by a physical cause - I felt much better for a couple of months but felt like I struggled in the last month before each injection. The GP had initially wanted me to wait 6 months before being retested but about three months ago I went in to see him because I was worried about how I would cope with this long a wait, so in the end I waited 3 months. I just got my results back and the b12 is quite high - 592. The folate is 5.6.
I have an appointment with the GP on Friday next week and want to be as well informed as possible for this. I have no idea whether this is a normal level for three months after an injection or not! Maybe I don't have pernicious anaemia and this has all been a red herring, I really don't know. I do eat plenty of dairy and a reasonable amount of meat, so there shouldn't be a dietary cause for low levels. My symptoms feel a million times better than they did 18 months ago but I continue to have pins and needles in my hands, pain in my feet, tinnitus, palpitations, anxiety, sleepiness in afternoons and fatigue and exhaustion generally.
Any advice people could offer would be greatly appreciated. I will try and give the PAS office a call when they're open too.
Many thanks in advance!
Laura
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Laura_g
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Blood levels of B12 are irrelevant once injections have started.
Your pins and needles are a sign of neurological damage. The British National Formulary says that you should have injections every 8 weeks (your doc will have a copy of this, but they have to read the second paragraph - mist stop after the first).
The IFA test is notoriously unreliable. People with PA will test negative half the time.
Flowchart outlines when PA and Antibody Negative PA should be diagnosed in UK.
Antibody Negative Pernicious Anaemia is PA where IFA test result is negative/normal.
2) BMJ B12 article
Emphasises importance of treating patients symptomatic for B12 deficiency even if B12 results are within range in order to prevent neurological damage.
UK B12 treatment info is also in BSH Cobalamin and Folate Guidelines , about a quarter through document.
Oral tablets are sometimes prescribed for dietary B12 deficiency but injections are also sometimes prescribed.
If a person eats a diet with plenty of B12 rich foods eg meat, fish, dairy, eggs, shellfish then dietary deficiency is less likely and it becomes more likely that there is an absorption problem.
Standard UK B12 treatment for B12 deficiency without neuro symptoms is 6 loading injections over 2 weeks then injections every 3 months.
UK B12 treatment for B12 deficiency with neurological symptoms eg tinnitus, pins and needles, tingling, memory problems, balance issues plus other neuro symptoms is a loading injection every other day for as long as symptoms continue to get better (this could mean loading injections for weeks even months) then an injection every 2 months.
Untreated or undertreated B12 deficiency could lead to permanent neurological damage including problems with spinal cord.
Next link is to PAS news item about neurological consequences of PA.
Do you get copies of all your blood test results? I learnt to after being told everything was normal and then fidning abnormal/borderline results on copies.
In relation to B12, I look at B12, folate, ferritin and full blood count (FBC).
Laura_g - I suggest that you try contacting Martyn/the PAS again and get their advice on how to tackle things - at this point it is difficult to know how the appointment with your GP will go. You could suggest that they take a look at the section of the PAS website that is specifically geared towards health professionals - and may be ask if they could do this in preparation for the appointment.
It is really awful that most GP's know little about B12 and Pernicious Anaemia. Martin Hooper had several negative blood tests results for Intrinsic Factor before getting a positive one. It is not a reliable test.
You have symptoms and need treatment! Your symptoms are continuing even though your blood levels are improving. What is in your blood isn't always a guide to what is reaching your cells. Many of us have difficulty absorbing the B12 we are being given. Has anything been done to address your low folate, this is an essential part of the absorption process?
I do hope you will get the help you need from your GP.
I didn't realise that my folate levels were low! It's never been mentioned by my GP. I did notice that it has decreased from 6.2 when I was initially tested last year to 5.6 now.
Thank you everyone for such helpful replies. I did speak to Martyn on Saturday and he was very helpful too, and offered to speak to the GP if necessary. I'm going to read all the links suggested above and make sure I'm as prepared as possible for Friday's appointment.
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